PatientsLikeMe Research

PatientsLikeMe is a clinical research platform that provides real-world, real-time insight into thousands of diseases and conditions. Our members have generated more than 35 million data points about disease, creating one of the largest repositories of patient-reported, cross-condition data available today. Their data have helped our researchers to refute traditional randomized clinical trials, model multiple diseases, validate quality measures, shed new light on medication adherence, and add and validate patient reported outcomes. They have also been used with clinicians to illuminate the patient journey, and played a pivotal role in research partnerships with the world’s top 20 pharmaceutical companies, federal regulatory agencies, research institutions and nonprofit organizations.

Featured Research

While data gathered on PatientsLikeMe has been used for a variety of purposes, questions remain about the quality of information gathered in this new way. Data collected online in other contexts such as online restaurant reviews may be subject to faking, so how can we be confident that patients are who they say they are? In this study we were able to link 94% of respondents to insurance claims using linking methods, thereby increasing confidence in the data through methods that maintain

In this site-wide survey of almost 4,000 PLM members we described some of the challenges faced by a subset of dissatisfied patients including difficulty setting treatment goals with their physician and getting enough time with their healthcare professionals. By sampling across different conditions we could also identify those conditions where patients appeared relatively disempowered such as fibromyalgia or chronic fatigue syndrome, highlighting the importance of stigma in empowerment. Many

Although ALS is considered an untreatable and relentlessly progressive disorder, anecdotal evidence suggests that some patients stabilize or even regain function, albeit temporarily, during the course of their disease journey. Using data from the PRO-ACT database our team identified a small subset of patients (7-25%) that did not decline over periods ranging from 6 to 18 months.

We announce a collaboration with M2Gen to give patients and researchers a more complete picture of patients’ experiences with cancer treatments and to shed new light on the factors that may affect outcomes and quality of life.

In the first-ever ALS virtual trial, PatientsLikeMe and The Duke ALS Clinic evaluate the potential of Lunasin, a soy peptide, to reverse symptoms in ALS patients.

A study published in Neurology shows that small, temporary plateaus and reversals are more common in ALS than we thought, and should not necessarily be interpreted as an ALS treatment effect.

We partner with The American College of Cardiology to bring patient focus to diabetes research and care

An extensive study published in the Sleep Medicine Journal shows that sleep issues are much more prevalent across chronic diseases than have been broadly understood, and that compared to just 9% of the general US population, 78% of patients with chronic conditions were at risk for insomnia

The PatientsLikeMe Team of Advisors, a patient only advisory team, creates and publishes the 'Best Practices Guide for Researchers,' which outlines steps for how researchers can meaningfully partner with patients.

Our study on medical marijuana reveals that patients with certain conditions believe it is the best available treatment for them, with fewer side effects than other options and few risks

We sign an unprecedented collaboration with the FDA to explore how patient-reported data can give new insights into drug safety.

An article in Clinical Researcher magazine by PatientsLikeMe and partner Genentech discusses how engaging patients will change clinical trials for the better

Our study with Biogen, which used a wearable device to monitor walking activity in people with MS, is featured in BusinessWeek and at the annual conference of the American Academy of Neurology

A PROSPER consortium member, PatientsLikeMe works to improve safety reporting in all phases of drug development with patient-reported outcomes of adverse events

PatientsLikeMe selects four pilot researchers for the Open Research Exchange

A sleep survey among 5,256 PatientsLikeMe members reveals that compared to the general population, people living with chronic conditions are nine times more likely to be at risk of having insomnia, and that one of three respondents rarely or never get a good night's sleep

A study with the Partners Multiple Sclerosis Center at Brigham & Women’s Hospital in Boston reveals that the MS community on PatientsLikeMe is comparable to a clinic population, and validates the platform's outcome

Robert Wood Johnson Foundation awards PatientsLikeMe a $1.9 million grant to create a real-time health learning system for the development of patient-centered health outcome measures. The award is announced by R&D Director Paul Wicks live on stage at TED.

Disease Milestones

We announce a collaboration with M2Gen to give patients and researchers a more complete picture of patients’ experiences with cancer treatments and to shed new light on the factors that may affect outcomes and quality of life.

In the first-ever ALS virtual trial, PatientsLikeMe and The Duke ALS Clinic evaluate the potential of Lunasin, a soy peptide, to reverse symptoms in ALS patients.